October Is Disability Employment Awareness Month

blank brown cafe caffeine

Photo by Pixabay on Pexels.com

 (image of a wood surface with a cup of coffee, notepad and pen, and laptop computer on it.)

It’s an ever-awkward question that comes up at parties, church, community events, game nights, the library.  It’s a blank line on a doctor’s form, an awkward moment in a conversation, a sharp stab to my gut and to my soul.

                It’s a simple query, is what it is.  I’m obviously an independent adult, so I should obviously have a quick answer to it.  “So what do you do?” people ask.  “Occupation______________” reads the form.  It is a drop-down menu on a computer form with spots for ‘homemaker’ ‘retired’ ‘student’ ‘employed part time’ ‘employed full time’.  It is me, never fitting in, never knowing exactly what to say.  People want to know how you fill your time.  They want to know what it is, exactly, that you do.

                And I never know what to say here, because in my mind, I do…..nothing.

                My occupation?  Well, the closest that I can get to an answer is that I’m a professional disabled person.  And though there may be nothing inherently wrong with me or with what I do with my time, I am unable to escape my deep feelings of shame about it.

                The basic fact is that I do not look like what somebody expects a disabled person to look like.  I walk normally, albeit more slowly, with a bit of a gait problem.  I speak ‘normally’, although I can sometimes be rude and at other times lack speech.  I don’t use a handicapped placard or a service dog or mobility aids.  I’m not hard of hearing or blind or anything like that.  Yet I’m disabled just the same.  My primary disability is an autism spectrum disorder and numerous mental health and learning disabilities.  To this I have added in recent years chronic pain and back problems.  What my disabilities mean to me personally is a long and rambling journey that I’m not inclined to take you on at this moment.  What they mean for me practically is that I receive state and federal benefits from social security and that I survive on that and the very-occasional consulting or writing gig.

                “What do you do all day?”  a student asked me this past spring.  She was interviewing me for a class about developmental disabilities at a nearby college.  I told her.  “Oh, so you basically do what everyone else does on the weekends and in their spare time!” she concluded. 

                I winced, and I felt lucky, then, that as an autistic person my emotions generally do not show on my face, for at that moment, I felt utterly devastated.  Somehow, I got through the rest of the interview and showed her the door before the tears came.  In one sentence, this kid – for she was a kid to me – managed to strike at the core of all my insecurities.  Because if it takes me a whole day to do what everyone else gets done on weekends and in their spare time, I must not be very efficient or valuable.  I must be practically useless – or at least, that’s how I felt.

                What do I do all day?  In all honesty, my routine is rather boring. I wake up later than most people, and it takes me an hour or two to get going because I need to wait for the combined effects of caffeine and painkillers to kick in before I’m ready to do anything.  I have 2-7 medical appointments a week – physical therapy, acupuncture, psychiatry.  I attempt to exercise a few times a week and to socialize.  I go to library events, serve on a church committee and my city’s disability commission.  I am the backup childcare for a friend. I bake for myself and for others – I’m the designated bringer-of-cakes to social gatherings. I investigate new doctors, new treatments, for my pain.  I spend an awful lot of time on hold to my insurance company or other places.  I write blog posts and letters and annoy facilities managers about access at hospitals and museums. And I rest, because all of that stuff is utterly exhausting to me.

                I know, in theory, that what I do has value.  I know, in theory, that how much money I make is not actually connected to my own worth as a person.  My religion’s first principle is that there is an inherent worth and dignity in all, and there’s no qualifier for that all.  I am all.  I am included.  I shouldn’t be ashamed…..and yet…….

                “What do you do?”

                I walk to a nearby park and take pictures at the end of the day.  I see people walking home from the bus and the subway, and I notice, especially, the women my age.  They look so amazingly put together, in dresses and boots and scarves just so, with shoulder bags and lunchboxes and Bluetooth headsets clipped to one ear.  I don’t know what they do, but I know that most of them probably spend the day in a building doing……….something……..that earns them money, that pays for their health insurance, that builds up society and enables people like me to simply live.

                If my soul were a color at that moment, it would be the dark-green, shiny-jade color of poison-ivy envy.  Like poison ivy, the jealousy I feel burns my soul and makes me want to leave my skin.  It isn’t right, it isn’t good what I feel.  I know that.  But I feel it just the same. 

                People always have this idea of what poor looks like.  “Looking like a homeless person” is my mother’s way of saying, (despite years of my protesting this awful phrase), that someone’s clothes are ill fitting, that they are dirty, unkempt, not put together.  It has never occurred to my mother that a homeless person can hold down a fulltime job yet sleep in their car, or that not all of the people standing on the roadside holding signs are necessarily unhoused. Looking poor, in the WASP world my mother comes from, means looking a certain way – neat, clean, unobtrusive.  Despite the fact that 95% of what I wear is from thrift shops, I am careful to groom and present myself in public so that I don’t ‘look poor’ and thus, get more respect from those who run things. 

From what I’ve read, Native American tribes, more often than not, valued disabled people as white people did not.  Unfortunately, the white people who came and colonized this land I now call home often saw disability as a curse from their god, and valued productivity over anything else.  They were, as every generation has before them, attempting to survive in a world that usually required quite a lot of hard work to do so, and therefore, hard workers were valued.  I might work hard at my life, but I don’t work hard at an actual job for a living, and so I get judged through a Puritanical lens that most white people don’t even know they are seeing through.

For most of my life, I truly thought that if I just worked harder, just changed my attitude, just smiled more, then my big dream of an office job in my field would come true.  My learning disabilities and my lack of phone skills wouldn’t matter.  I would have business cards with an organization’s logo on them just like my siblings do.  I would have a name plate with my name, be listed in the company directory, have my smiling face on an ID card that I’d wear on a lanyard around my neck.  I would have an office where I could put up a few photos and tchotkes that are important to me.

I know, intellectually, that these physical representations of productivity don’t actually mean anything.  I know that there are plenty of people who will never get any of those things and that they are just as valuable as I am.  But I also know that some part of me will never stop longing for them. 

I’ve heard many people say how much they despise their work.  I’ve heard many say how they wish they could just quit, but they can’t, because of the benefits and the salary, because of their need to maintain their current lifestyle.  I wonder if any of those people know how much I would absolutely (but not literally) kill for a job like theirs.  I wonder if any of them ever pause in the middle of a long, boring task and think ‘damn, I’m lucky.  I get to have lunch in a cafeteria today’ or ‘I have my own mug in this office’.

The world is drowning in sorrow and grief and problems.  All around me, people are doing what they can, how they can, trying to survive the fast-rising waters.  If I weren’t in so much pain, I could probably work an office job for 20 or even 30 hours a week, but if I ever did that – if I ever earn more than $1,100 a month – my social security will be cut off for life, because I will have proven that I am able to work, and thus, not really disabled.  No matter how many liberal politicians we elect, this is unlikely to change, because a fundamental belief of the United States is that if you don’t work, then you don’t deserve to live about the poverty level. Which means that I’m stuck at this level for life.  I won’t pass go, I won’t collect anything but the bare-bones minimum to live on.  It’s like the ‘jail’ card in monopoly except that I have no chance of rolling doubles or getting a card to go free.  I’m a professional disabled person, and this is the best I can do.

Maybe, though…..just maybe….one day….they’ll add another option to those drop-down menus.  ‘Constrained by my body, neurology and society into a life I don’t really want’ isn’t a convenient box to check, but it is my life, and it is the life of millions of Americans.  It’s about damn time that this was respected as much as any other occupation. 

Advertisements

Neuropsych Testing: a government-ordered test guaranteed to lower your self esteem

 

So not many people know this, but to the United States government, there always remains the distinct possibility that your disability, the one you were born with, could some day change and poof! You’re not disabled anymore.  Because of this belief, when you apply for certain services, it wants to know how recently you were fully evaluated and tested for your disability, and if it has been more than  a certain number of years, they would like you to prove that you’re disabled.

Recently, my state wanted to know whether my primary disability was autism or mental health disabilities.  To me, this is like asking if oobleck is a liquid or a solid (it’s both!) but since I do need services, I dutifully trekked into the Big City and endured about six hours of neurological testing. To say it was unpleasant is an understatement.  There is nothing better to make an adult feel like a toddler than to undergo tests designed to root out your weaknesses and slap you with a functioning label.

The tests start with your initial appointment.  The goal of this appointment is to get an in-depth medical history.  In-depth, unfortunately, does not necessarily mean accurate.  As I would discover later, the interviewer got several things wrong on my medical history.  Some of these were significant things, like the reason I qualified for social security disability.

“So you qualified because of your back injury?”  the doctor – let’s call him Dr. Z – asked.

“No.  Because of my autism,” I distinctly remember telling him.

A month later when I sit down to look at my medical history, it says that I got it due to my autism and back problems.

Medical histories are, overall, a very weird thing, because you are expected to bare your soul and most private secrets to somebody you have just met.  The doctors want to know, among other things, what your birth was like (“I have no idea!”  I said to Anna, later.  “It’s not like I was there!” She looked at me oddly.  “Yes, you were,” she pointed out.  Oh.  Yes, I guess I was.  But it’s not like I remember it!)  They want to know about your family, what they do, their level of education, illnesses, medical and mental.  Your childhood, any significant head injuries, hospitalizations, abuse.  They want to know every medication you’ve ever been on.  (How about I just copy this entire psychopharmocology textbook down and we will call it a day.)

“How often do you socialize?”  Dr. Z asks.

“Well, does church count?”

“I don’t know, does it?”

“How many friends do you have?”

“How do you define friends?”

“However you do.”

Almost all of the questions are open ended, which is the sort of question that I’m the worst at.  Looking over their report later, I see that I left things out.  I assumed that by explaining I see my niblings that they would understand I also see my siblings, who are the parents of the niblings.  They wrote down that I had no contact with my siblings.  Unfortunately, I think that such misunderstandings are basically impossible to avoid. When you have a neurotypical person interviewing an autistic person, things will get left out.  Things will get overlooked.  Autistic people often don’t offer any more information than precisely what was asked for.  When others want us to elaborate our answers, we freeze, and the words don’t come.  When I am writing, my brain works better, smoother, than when I am speaking.  This is a simple fact.  This fact is not at all reflected in any of the testing that I did.

I was being interviewed by two strange men – Dr. Z and his graduate assistant, who sat, awkwardly typing, in a corner of the small room the entire time and didn’t participate in the conversation – I think he was just there as a scribe.  They asked me about my dating life.  I blanched.  I read both of these men as straight and knew both of them not at all.

“I – I can’t talk about that.  Not in front of you.”

“Okay, well, why did you write down ‘queer’ as your sexual orientation?  How is that different from bisexual?”  Dr. Z asked.

I am genuinely confused.  It’s 2018, and we are in one of the most liberal cities in the country, and he doesn’t know the difference?  I try to explain, but I’m not sure if he gets it.  I do know that I’m utterly humiliated when the word ‘menstruation’ is written down on the report regarding some of my medical issues – I had couched it in the polite euphemism of ‘that time of the month’.  I was raised to believe that men had absolutely nothing to do with that sort of thing, and would be perfectly happy pretending that 50% of the world didn’t know that you-know-whats existed.

Two weeks later.  I get up, bright and early, and am shown into yet another tiny, windowless room with fluorescent lights that flicker and hum.  This time it’s a different doctor as Dr. Z has gone on vacation.  A different graduate student/doctoral fellow.  The doctoral fellow will be doing the actual testing.  I have previously explained that I have taken many of these tests numerous times before, and I have also studied them from an academic standpoint.  For this reason, some of the tests that I will be given are somewhat obscure.  Well, let’s go then.  Time to start.

One of the things I have always prided myself on is my memory.  I have a good memory.  I can remember being six months old!  I don’t know any neurotypical people who can do that.  But these tests of memory aren’t like that.  They aren’t tied to emotional events.  They are strings of numbers that I repeat back.  They are lots of words I have to remember.

In the hallway, a pager goes off.  I startle, look towards the door, wait for it to stop.

“Please remember that this test is timed,”  Fellow says.

“Yes, but there’s that loud noise!”  I exclaim.

“You are invalidating the tests if you interrupt them,”  he says in a way that makes me think he is only pretending to be patient.

“You honestly expect autistic people to ignore that noise?”  I ask.

Yes, apparently, he does.  This incident was written on the report as, “She startled with an audible gasp and postural rigidity when a pager beeped in the hallway on three occasions.”  Which is some really weird wording for ‘she was startled because she’s autistic and startles easily’, but the entire report is written in really Fancy Medical Language.  I reported, denied, stated, complained – I never just said anything.  And for the record I don’t think I complained about anything, other than the stupid beepers going off, (It’s 2018, why are you using pagers?) and one particular test.

More words, more numbers, some simple math that I know I mess up.  I remember that a chisel is a tool.  I circle all the X’s on a page of other letters.  I play several weird dot-to-dot exercises.  Then it comes – the worst part.  The stupid-little-faces part.

In this test, you are presented with a grid of about twenty or thirty squares.  About half the grid is filled in with small photographs of faces, of all ages and ethnicities.  You look at the grid, then it is taken away and you are given a lot of little cards with faces on them and a blank grid.  Your job is to not only recognize the faces that were on the original grid, but to put them in their original spot.  This proves to be basically impossible for me, but I still have to do it three or four times.

Another test with faces.  Match the face to the emotion.  Once again, I have absolutely no idea.  I explain to the tester that I don’t need to do this because in real life I would just ask the person how they are feeling.  I would explain that I’m autistic and I have trouble telling if they’re mad or not so could they tell me, please?  This does not get me out of this test, or the next one, where I hear a voice and have to match the emotion in the voice to one of four faces.  The really tricky part of this test is that the race and gender of the speaker’s voice does not necessarily match the race and gender of the pictures on the cards.  I am supposed to do it by tone of voice alone.  Then I am supposed to guess what they are feeling.  I say guess because, well, it really is just a game of guessing to me.  When in doubt – which is the majority of the time – I pick angry. In my experience it is always better to assume that people are angry.

Okay, here’s an easy test.  Name that object.  There’s a flipbook with a drawing on each page, and your job is to name the thing in the picture.  Some of them are weird.  Harmonica, accordion – this seems to be a little biased, I mean, would I know what an accordion was if I hadn’t watched an enormous amount of television as a child?  Probably not.  Chair, tree – what is that called?  I know what it is, my mom has one to hold up the roses which never bloom – trellis.  That’s a trellis.  That seems incredibly culturally-bound.  Would someone raised in an apartment building know what a trellis was?  Probably not.  Wait, what’s this picture?  It can’t be.  It is.  It’s a noose.

A noose.  As in, a picture of a loop of rope hanging from the top of the page, a traditional hangman’s noose.  I am outraged.  I am shocked.  Despite the fact that the report said I had a ‘flat, constricted affect throughout the interview process’ I remember my body and brain exploding at this injustice.  Did they have any idea of how incredibly insensitive this picture was?  How would seeing that picture feel to a POC?  Did the Black Lives Matter movement mean nothing to them?  I didn’t care that the test was from the 1950’s.  It was totally out of date, it was inconceivable to me that they didn’t see the racism in that small drawing.  A honest-to-god effing noose.

The tester promised to bring it up at some meeting or another.  I have absolutely no doubt that he never did.  When I got my results his supervisor had never heard of my complaints and dismissed them.  After all, I’m not a psychologist or a neurologist.  Who am I to question the quality of a test designed to tell them how good I am at naming objects?  At one point in the report it said that my thought content was ‘generally appropriate to the topics discussed.’  I’m pretty sure that the parts where I was inappropriate were when I talked about social justice issues like racism, classism, and ableism and the myriad of problems that the tests would cause for people who were not, as I was, raised in an upper-middle-class, white family.  A noose!  I still can’t get over it.  2018.  A noose on a neurological test, a test which is presumably being taken by people who are likely a little bit more prone to suicidal ideation to begin with.

We went on – I requested and was granted a break.  There were some little plastic squares with red and white triangles on them.  I had to arrange the squares so that they matched the picture, like tangrams, except at the end you don’t get the satisfaction of seeing a bird or a house, you just get the knowledge that you scored badly on a test that toddlers could do.  On the fifth or sixth one I couldn’t make the pictures match no matter how much I turned the squares and triangles and the test ended.

This next test is a weird one.  It involves a red bead, a blue bead and a green bead, all on sticks.  The goal of this test is to make the pattern of beads-on-sticks match the one that the examiner made, using the fewest number of moves.  I’ve never seen this test.  It’s weird.  It definitely feels like a baby toy.  (It’s apparently called the Tower of London.  The inventors obviously don’t think anyone taking the test know what happened in the real Tower of London.)  I was average or below average on this ‘test of planning’.  Planning what?  I have no idea.

I looked at a picture and told a story – the story would have been much longer had I been allowed to type it.  My story was apparently ‘overly descriptive’ – I wrote ‘several complex sentences regarding the gender roles that were assumed by the depicted figures’.  Ha.  This was definitely me being snarky on purpose and the tester missing it entirely.  I love poking and prodding at stereotypes and gender roles and challenging people’s expectations.  When I was told to repeat back a story the tester read to me I did so with social commentary because, well, of course I did.  That’s how my memory works.  Everything is tied to emotion and my own interpretation of things.  I don’t remember that Mrs. B lived in this neighborhood because I was told; I remember because this the story said she was a single mother who worked as a waitress and I thought that neighborhood was very pricey for a single mother to live in on a waitress’s salary and thus the whole story was unrealistic.  (I am fairly certain that the tester did not appreciate my commentary.)

There were a few more tests, including naming every word you can think of beginning with the letter ‘F’, which of course meant that my brain went ‘Fuck!’ and then ‘I can’t say fuck! What are other words that begin with F?  I can’t say fuck in front of the tester!’  I also named animals, which for me consisted mostly of dog breeds, and I clicked a button on a computer every time the letter X came up.  I don’t see the point of that test at all and I was utterly exhausted by this point.  I went home and collapsed.

Two weeks later, I faced Fellow and his supervisor, Dr. A, in a small office.  I asked my cousin, who works in the same medical facility, to come along as support, because I knew that I would challenge some of their findings and I also knew that I couldn’t do that without someone backing me up.  It…..did not go well.  To say the least.

“It’s like they didn’t even bother to get to know you at all,” my therapist said a few weeks later, looking at the testing.

“Nope,” I agreed. “They didn’t.”

Dr. A suggested that I undergo speech therapy and social skills therapy.  I said no, I was in that therapy for 20 years and I had accepted the fact that my social skills were not going to improve any longer.  She suggested a parent-led organization which I have had bad experiences with in the past.  She suggested…….not much else.

Overall, I feel like the entire testing process was a total waste of everyone’s time, energy, and money, except mine, because I didn’t pay for the testing.  The state wanted it, the state paid for it, the state got it.  I officially have Autism Spectrum Disorder as defined in the DSM 5.

No surprise there.  What was surprising was how after all these years, neuropsych tests still make me feel incredibly stupid.

Not Joking: Why I Won’t Be Playing a Card Game That Directly Oppresses My People

 

Wow. Am I exhausted! Not just now, but always.  Living my life means living in a perpetual state of exhaustion, punctuated by short spurts of productiveness brought to you by the makers of caffeine. It’s not just the physical and mental work I have to do to keep myself alive and in decent shape – it is dealing with and living in a society that constantly forces me to prove myself to them and which never, ever lets me let my guard down. I truly think that one of the most tiring and depressing things about living with a disability, especially a developmental disability, is dealing with micro aggressions on a day to day basis.

                A micro aggression, if you didn’t know, is a subtle form of discrimination faced by oppressed groups.  For example, a racist microaggression is when someone crosses the street when a person of color is walking near them.  A transphobic microaggression is when a form only has two boxes, male and female, for gender.  An abelist microaggression is people assuming that intelligence equals IQ, or that someone’s verbal abilities represent their actual ability to express their thoughts.

                The thing about micro aggressions is that you aren’t always prepared for them.  They come at you constantly, but at irregular intervals.  Each one is like a punch to the gut.  Each one leaves me a little bit tired.  Dealing with them over and over and over, however, leaves me exhausted beyond belief.

                I will give you an example.  A few years ago a card game came out called ‘Cards Against Humanity’.  It was a rip off of ‘Apples to Apples’, which is a fun, easy game about comparisons.  I love words and I process language much better than I do other forms of media, so I love Apples to Apples.  It’s easy to learn, fairly quick, and requires no strategy or skills that I don’t have.  (Unlike, say, Settlers of Cataan, where you are expected to not only plan your moves but predict other’s moves.)  So when my friends started playing ‘Cards Against Humanity’, I joined in, thinking it would be a fun way to spend an evening.

                As it turns out, it was an exercise in ‘do I speak up or do I stay silent in the face of micro aggressions’.  The game works with white and black cards.  On the black card is a situation or a question with a blank in it.  Each player is given a number of white cards which they submit to the person who is the dealer that round.  The dealer picks the white card they think fits best.  It works the same way as Apples to Apples, except that these cards, I quickly discovered, are not mean to be fun.  They are meant to be mean.  And they succeed.

                I remember coming across the white card ‘the profoundly handicapped’.  I’m the first to admit that disability is funny, but disability is only funny in a specific context in the disability community.  I know many people who would fit the description, ‘profoundly handicapped’ – although the makers of the game clearly didn’t know that the term handicapped went out about 30 years ago and the term is disabled now.  When I read that card, I thought of people I know – Sean, who mentored me and gave me my first political job, Missy, who never spoke a word but whose blue eyes and wild laugh fill my heart with joy, Brooke, who’s knock-knock jokes never fail to crack me up.  I thought of my friends who have fought medical battles and refused DNRs, who have been knocked out by a seizure and gotten back up on the stage, who have given me support when I needed it most, driven me to the ER when I was in a crisis, texted me back in the middle of the night.

                I quietly removed that card from the deck.  I then went through the cards and removed a few more, ones that referenced things like dwarf-tossing.  I thought of my friends who are Little People, and whose bones break so easily.  My stomach twisted as I imagined them being tossed in the air, the butt of a joke.

                Cards Against Humanity is an excellent example of how society normalizes micro aggressions.  Because all of the cards are meant to make people laugh, people get into the mindset that no one card is worse than the other.  This is not true.  The basic fact is that oppressed groups do not have the social capital to defend themselves against an onslaught of micro aggressions because they are so busy dealing with bigger macro aggressions.  We are trying to ensure our basic civil rights, so a card game or the off-color joke a cousin tells is simply too small to bother with. 

                This bothers me, because I think that small micro aggressions such as this card game, which normalizes making fun of people with disabilities, black people, Jewish people, really any minority group that you can think of, lead to bigger micro aggressions.   It allows people in privileged positions, such as white, cis, nondisabled men, to laugh with no repercussions.  They do not see how their laughter directly impacts public policy.  But the fact is that a guy who thinks making fun of ‘the profoundly handicapped’ is okay is not going to speak up when a bill comes to cut special education funding, because due to this card, he has already ‘othered’ that group.  The normalization of racism, where white people ‘othered’ POC, can be said to be a direct cause of segregated schools, red-lining and sundown towns.  The normalization of making ableism means that nobody notices the lack of disabled people and disabled voices, and it is very hard to complain about a public policy when the policy makers are meeting in an inaccessible room. After all, w e don’t care about ‘others’, we care about ourselves.

                Sometimes I feel that I straddle two worlds.  On the one hand, I’m an intelligent, white woman, raised upper-middle-class, with a master’s degree, and I always appear put-together if I step outside my door.  On the other, I’m surviving on social security, struggle mightily in day-to-day tasks, and spent years in special education, which means that my knowledge has significant gaps.  I do things slower – I process things slower, I respond slower, I even walk slower.  This doesn’t mean that I’m lesser than my friends who do things fast.  It just means that I’m different, and that’s okay. 

                Because I process things slower and make decisions slower, it took me a few years to be able to stop ‘editing’ the cards when we played Cards Against Humanity, and instead, to decide that I was no longer going to play at all.  I decided that by playing, I was contributing to my own and other’s oppression.  I was saying that it was okay with me for others to make fun of people.  And it’s not.  It is not okay to make fun of people. It is not okay to treat them badly.  The game made me a worse person.  It made my friends worse people.  It did not encourage us to be our best selves or our kindest selves, and if there is one thing I know for sure in this world, it is that you’ve got to, you’ve simply got to be kind.

                Luckily, as my friends and I matured, scatological humor lost its funniness.  We moved on to other things, other pursuits.  Many of my friends are deeply involved in progressive political causes, and a number of them have children whom they would never, ever expose to a game like Cards Against Humanity because they want their children to be kind, generous, humble human beings.  Whoever made that card game was none of those things.  They might think they are, but they are not.

                Somewhere in the Bible, somebody, I’m pretty sure it was Jesus but what do I know, I’m a UU, says something along the lines of, ‘remember that whatever you do to the least of mine you do to me’ – basically, however you treat any oppressed group is also how you’re treating those closest to you, those you love, because we are all the same.  We are all humans, and living in this society we all contribute to micro aggressions.  And if you wouldn’t want your mother or best friend to feel hurt – physically hurt, like a knife in the gut, like a PTSD-flashback to being called the r-word in 3rd grade, like a nightmare that leaves you sweaty and screaming – then you shouldn’t hurt anyone.

                I’m not quite there yet, but micro aggressions can only be driven out of society by micro actions. By publicly refusing to play Cards Against Humanity, I’m publicly saying that it is not okay to treat people that way.  Missy cannot speak but she does not deserve to be made fun of, and neither does anyone else I know.  They deserve kindness.  So do you.  So do I. 

PS. MicrosoftWord says that microaggression is two words. I’ve seen it written as micro-aggression, micro aggression, and microaggression.  I’ve truly no idea which one to use so I have used all three.

PPS.  I sent this essay to a friend of mine to review.  He disagreed with me because, he said, the makers of Cards Against Humanity do good things – they donate to anti-Trump causes, they believe in the same progressive politics that I do.  From the research I’ve done this appears to be true.  However, I do not think that this excuses their abhorrent behavior.  They continue to profit from the direct oppression of others.  This is inexcusable.  In a time when the vast majority of people with disabilities live in poverty, their jokes about ‘the profoundly handicapped’ keep us down while allowing them to live, I assume, at least comfortable lifestyles.  (Because no matter how much money they donate to charity, I’m willing to bet my non-existent cash that they don’t skip meals or deny themselves basic necessities of life to save for their prescriptions.) The only way to solve this would be for the creators themselves to publicly denounce the game, admit they were wrong, stop selling it, and donate any profits they have left over to causes which directly impact the people they made fun of in positive ways. 

Why I Dislike Vocational Rehabilitation

I make no secret of the fact that I dislike my state’s rehabilitation commission, or SRC.  It is the state agency that is charged with helping disabled people find and keep jobs, but despite my having worked with them for over a decade, they have never actually found me one.  They have never actually helped me in any way.  Every employment opportunity that I have had is the direct result of my own hard work and making connections – it has nothing to do with them.  Yet, a requirement of receiving social security disability is that you work on getting a job, and so again and again, I find myself in a small, closed room with an overworked, underpaid counselor.

Recently, in order to save money, the state announced that they would close the current SRC office that I go to.  They printed flyers about how they were ‘moving’, and this angered me, because they were not moving.  They were closing.  The office – a windowless warren of rooms behind a Chinese restaurant that somehow always smelled bad and where the only parking available was for one-hour increments – was closing.  The counselors were being scattered – some close by, some much further away.

With only a few weeks notice, they held a meeting. I, being the kind of person who truly wants to improve the services I receive, showed up.  Unfortunately, due to a confluence of factors – the short notice, the difficulty of the location, the fact that it was on a night when many other meetings were taking place – I was the only consumer there, aside from two young adults brought by their parents, neither of whom said anything.

I entered the room.  A stranger asked me who I was – not for the first time, because I don’t have a visible disability and was dressed neatly in a sundress and sandals, I was mistaken for a disability professional.  (Which I am.  I just also happened to be a SRC client.  They had trouble with this concept.)

“Oh, who’s your counselor?” they inquired then.

I told them.  “Name, name.”

“Oh she’s awesome!” they enthushed.

I considered.  I considered the fact that in three years I had yet to get a viable job lead from her and that she had outright said that my many medical problems made helping me look for work difficult.  “Well,” I said with as much diplomacy as I could muster, “that’s one opinion.”

The truth is that I like my counselor.  She’s a good person who shares similar values to mine.  But as an actual vocational rehabilitation counselor, she has done almost nothing for me.  I would say that is a failing of her, except that I have had other counselors who also did nothing.  By this point I have basically concluded that it is the agency, not the individuals, that is the problem.

About two dozen people eventually showed up, the vast majority being staff from the office that was being closed.  It began badly because there was no microphone.  None of the staff thought that this was a problem because ‘they could all talk loud’.  To me it was a simple matter of accessibility – I mean, the meeting is supposedly for disabled people and you don’t have a microphone? Nope.  They don’t.  and they don’t care, and then – the Commissioner entered, the person in charge of the entire state agency.

“I’m 99% certain that this is just going to be a gripe fest,” I texted a friend.  To nobody’s surprise, I was right.  What I was surprised by was how the Commissioner seemed unable to deviate from her script, how she truly did not seem to care about the consumers or the staff, and how incredibly ableist her comments and attitude were.

Commissioner lied.  This is a basic fact.  The flyers that her office printed out and mailed said that the office was moving.  Moving implies packing up an office and relocating it to a different place.  They were in fact closing.  Just because everyone at Dunkin Donuts is now working at another Dunkin Dontus doesn’t mean that the empty Dunkin Donuts is still open.  If you can’t physically go to a place and find the same staff and administration, if you have to go two cities over to another Dunkin Donuts entirely, then it hasn’t moved.  It has closed.  The employees, of course, denied this.

The commissioner readily admitted that she didn’t have a disability, and that she knew that her hiring, last summer, had been somewhat controversial.  But!  She took pains to point out, she did have a very good sob story about a family member with a disability.  No, she didn’t have a background in disability services or vocational rehabilitation or disability studies, she had a background in workforce development, but! She had shadowed a counselor for an entire day! So she knew exactly what it was like.

I stared at her with what I hoped was an expression of utter no-shitting-me.   I asked, “If you were asked to be the head of the NAACP, would you accept the position?”

Commissioner is white.  I had hopes that she would understand the metaphor.  Despite my being the autistic one, it went right over her head.  “Yes,” she said.  “If they asked me to, yes, I would.”

It was at this point that I probably should have left.  Instead I kept texting my friend (which is why I have such accurate notes on what happened despite it happening a few months ago.)

I learned that 67% of consumers were under the age of 35, which was why the agency was focusing on them and on high school aged youth, because people had to get into the work mindset early.  I didn’t understand.

“What makes you think that you’re doing such a good job with those over the age of 35?”  I asked.  “What are your statistics there?  Are they all getting jobs and enabling you to focus on young people?”

Commissioner and her staff had no answer but assured me that they could get me the statistics.  I declined.  I knew that any statistics they gave me would more than likely be bs.  Just a few years earlier, after all, the agency listed me as having a full time job, a total success, when in fact, it was an eight-hour-a-week academic fellowship for nine months.

The office was closing because of lack of money.  Period.  There was no money, the money didn’t exist, they didn’t get it, blah blah blah stuff I don’t understand.  The building owner, seated at the back, offered on the spot to reduce the rent to 1/3 of what it was now.  The Commissioner said nope, there was no money.

“But you’re asking staff to drive more to meet people?”  a counselor who was being relocated asked.  “And to meet them in the community?  And to move all of our offices to X, Y, and Z?”
“Yes,” the Commissioner said.  (Later on at the meeting she would emphasize how staff should be driving less to save money.  This was the point where I began to look for her second head.)

“So how much will that cost?  Will it be comparable to the rent?”

Commissioner didn’t know.  She had absolutely no idea of how much it was costing to move the office or if the savings would make a significant dent in the budget.  She just knew that by crossing an item off a list, she could save X dollars a year.  She didn’t care about the fact that moving offices was not just a hardship for the counselors, it was a hardship for the clients, too.  The office that my own counselor is moving to is one where I had numerous meltdowns because counselors there insisted I act neuro-typically and I was unable to do so.  I am scared of that office.  I am scared of the people I might see there.  My counselor knows this.  She says we can maybe meet at X library.

“You mean the library where that guy was stabbed last fall?”  I was shocked.  “I don’t want to go there!  It’s scary!”

The commissioner engaged a lot with me because I was the only consumer engaging with her.  She admitted that she needed a lot of guidance and help from disabled people, but shut me down when I said I was happy to do so only I was a professional and I expected to get paid.

“It’s a huge change for everyone,” she said.

Well, yes….but it’s worse for us.  I have meltdowns over daylight savings time.  It is really, really hard being disabled, it is a huge inconvenience, and she was moving people around like checkers, with no consideration whatsoever for our feelings and lives.

“You could always do skype meetings!” Commissioner suggested.  “Or Facetime!”

“Oh, no,” one counselor said, aghast.  “That would make it too easy for people.  When they have to come into the office, they have to get dressed decently and make it here on time, just like you would for a job.  It gives people practice.  Skyping would make it too easy for people because they wouldn’t have to leave their house.”

Given how incredibly difficult it is for many disabled people, including myself, to leave the house I was unmoved by this.  Also, I had no idea that I was being judged on my appearance every time I visit the SRC.  I happen to wear dresses and skirts a lot because they are more comfortable, but would showing up in jeans and sneakers mean that I’m not ready for a job?  Sheesh.  The counselor emphasized her master’s degree.  I felt like rolling mine up and whacking her with it.

The basic fact is that the state agency charged with integrating disabled people into the workforce doesn’t give a single flying squirrel about disabled people.  They have no idea how hard it is to live our lives, to juggle doctors appointments, to remember to eat and take meds and exercise and find housing in this brutal market.  They only care about statistics.  They couldn’t tell me how many people with disabilities were employed by SRC, only that they were the 2nd highest in the state in terms of the proportion of PWDs employed there.  They talked about entrepreneurship like it was a brand-new idea straight off the Starship Enterprise.  They listened, but they only heard what they wanted to hear.

I’m still disabled, they’re still jerks, and I still don’t have a job.

“When your health problems clear up,” my counselor tells me.

It is looking increasingly likely that my health problems will never clear up.  That I will always be as disabled as I am now, that I will always be in pain.  But isn’t the whole point of the SRC to show that disabled people can be good employees, that we can do things and achieve things?  Yet how can that ever be done when the Commissioner, who sets the tone for the entire agency, so obviously doesn’t care about the people whose lives she affects so much?

She doesn’t care.  So why should I?  So why do I?

“Imagine,” I said to her at the end as I handed her my card, “imagine if instead of being against you, I was working with you.”

I can imagine.  I can imagine a system of mutual respect, where strengths and not deficits are emphasized, where all people, regardless of disability or severity of their impairment or their age, are treated the same.  I can imagine.  It is too bad that the commissioner cannot.

When I Grow Up: A Social Security Story

When I grow up
I will be tall enough to reach the branches
that I need to reach to climb the trees
you get to climb when you’re grown up.

And when I grow up
I will be smart enough to answer all
the questions that you need to know
the answers to before you’re grown up.

And when I grow up
I will eat sweets every day
on the way to work and I
will go to bed late every night!

And I will wake up
when the sun comes up and I
will watch cartoons until my eyes go square

and I won’t care ’cause I’ll be all grown up!
When I grow up!
When I grow up, when I grow up
(When I grow up)
I will be strong enough to carry all
the heavy things you have to haul
around with you when you’re a grown-up!
And when I grow up, when I grow up
(When I grow up)
I will be brave enough to fight the creatures
that you have to fight beneath the bed
each night to be a grown-up!
And when I grow up
(When I grow up)
I will have treats every day.
And I’ll play with things that mum pretends
that mums don’t think are fun.
And I will wake up
when the sun comes up and I
will spend all day just lying in the sun
and I won’t burn ’cause I’ll be all grown-up!
When I grow up!

 

If you ask a small child what they want to be when they grow up, once they’ve gotten past the stage of wanting to be a cat or a dog, they will inevitably answer ‘a firefighter’ ‘a doctor’ ‘a truck driver’ ‘a princess’ or something along those lines.  As they get older, their dreams become more distinct, more realistic: ‘a marine biologist’ ‘a veterinarian’ ‘a lawyer’ ‘an artist’ ‘an elementary school teacher.’

I could ask a thousand children this question and although I might get a few confused looks, a few ‘I don’t knows’ and, inevitably, a few kids still convinced that they could grow up to be a fairy or cat, not one of them will ever say, ‘I want to be disabled’ because, well, being disabled isn’t a thing to be.  Even school age children know that in order to be a ‘real’ adult, you have to work and bring home a paycheck.  You have to support yourself.  That is, after all, the whole point of growing up: to become a contributing member of society.

When I was four or five, I wanted to be a doctor.  Then I found out how much school they needed and nope, off the table.  When I was in high school, I was determined to be a middle-school social studies teacher.  In college, I took all the right courses to become one, only to fail utterly at my internships because it turns out that passion for a subject couldn’t make up for the fact that my social skills were not up to being a teacher.  Around this time, as my identity as a disabled person came into being, I tried another internship at a disability rights organization.  I loved it.  I thought ‘I found my people!’ and knew right then that I was going to be a disability rights activist.

Which, over a dozen years later, it turns out that I am.  Too bad it never occurred to me that I couldn’t make a living doing it.

I remember, very clearly, being told that I needed to save money as a teenager, and that I needed to protect my savings, because by the time I was an adult, social security wasn’t going to be around.  They would run out of money, and I would need to support myself in my old age.  It didn’t occur to anyone then that I would possibly need social security before then.  After all, I was a bright, ambitious person with great references and internships behind me – who wouldn’t want to hire me?

As it turns out………every single place I’ve ever applied to.

I’ve said it before and I will say it again. The fact is that the majority of hiring decisions are made within the first few minutes of meeting someone based on their nonverbal cues and charisma. (https://theundercoverrecruiter.com/infographic-how-interviewers-know-when-hire-you-90-seconds/) I don’t have that.  Knowledge, yes.  Skills, yes.  Ability to care, yes.  Executive functioning……I can work around.  But charisma?  That is a shibboleth that I cannot manifest.

And so it was that last spring I started to apply for social security. Even then, I thought that it wouldn’t be for the long-term.  I had heard of several jobs in the area that I was sure I’d be perfect for.  As I did (okay, let’s be honest here, my mom did 99% of it) the paperwork, I thought, well, it will be nice to have for a few months to tide me over, but I’m sure that this job or that one will work out.  It really sounds perfect for me.  I really could do this.

But I couldn’t.  I didn’t qualify for my dream jobs.  I did qualify for social security. 

Not a lot, and the details of it I will keep private, but it is enough to live on if I’m very, very careful.  Which I am, because if nothing else, this process has taught me that you cannot be too careful.  You cannot be too cautious.  Hopes and dreams are fragile things, easily broken by a sudden gust of wind.  The problem is that when you’ve assumed for over thirty years that you would grow up to be a contributing, working member of society and now you find out that……..well………you won’t be, the realization cracks you like a piece of glass hit by a hammer. I grew up with the American idea of work hard, and you’ll get to where you want to be.  People who don’t work are lazy, they are drains on society.  The pain as I confront the reality of having to accept social security feels like shards of grass embedding themselves in my soul and heart.

I’m lazy. I’m useless.  I’m stupid.  I’m lazy.  The mantra repeats, over and over, again and again.  All of my worst dreams are coming true, even as another part of me feels genuine relief that I don’t have to worry about rent or food this month. If you had tried harder, you could have done it.  I know this isn’t true.  I know that I truly tried as hard as I possibly could.  This does not shut up the voices in my brain.

For all that I broadcast about disability acceptance, autistic strengths, nothing to be ashamed of – I am ashamed.  I am ashamed that I couldn’t make it in the ‘real world’ and ashamed that I may never be able to. 

“What would have happened if you’d gotten that dream job?”  my mom asked me recently.

“I would have burned out within weeks,” I admitted.

“Yes.  That’s what I think, too,” she said.

I got social security on my first try.  This is unusual.  Part of it, I know, is that my doctors knew what to write on the forms, but part of it is the part that I’m having that most trouble wrapping my mind around.  Yes, I’m that disabled.  Yes, I’m that impaired.  No, I cannot work full time – not now, probably not ever.

The United States government, after all, for all the talk of welfare and disability fraud, doesn’t actually make it easy to qualify as a disabled person.  There are dozens of forms to fill out, reports to be made, every IEP and therapist visit you ever had must be documented.  Luckily, my mother is an extraordinarily organized person so was able to find all of these documents with ease, dating back to when I was three and a half and the forms were mimeographed in purple ink (shoutout to whoever can still remember that smell.)  Still, my mind keeps coming back to the fact that, all along, I was actually more disabled than I ever thought I was.

Because the government doesn’t give out social security to people who are a little bit awkward or who have a little bit of trouble learning.  It gives it out to people who annoy others so badly that they ruin funerals and weddings.  It gives social security to those who have meltdowns, long, horrible, hours-long meltdowns, over the social security office running late with its appointments.  It gives it to people who cannot stop self-harming, who take enough psychiatric medication to knock out a horse, who cannot make back and forth conversation without help, who cannot organize themselves or fill out forms or budget on their own.  Who have no real understanding of the stock market despite having a graduate degree.  Who go to one meeting and are exhausted for the day. It gives it……..to people……..like me.

I feel the desperate need to make it clear here that I don’t want social security.  I don’t want to take away resources from other, more deserving people.  But there exists right now within me so many dichotomies, so many factions, I feel as if I am at war: I don’t want it, but I do need it.  I don’t think others should be ashamed of getting it, yet I am ashamed.  I don’t think that a person’s self-worth should be tied to their ability to contribute monetarily to the economy, yet mine is.  My ideals and principles are sound.  My feelings are another matter entirely.

Little kids know what adults do all day: they get up, they go to work, they come home.  Recently someone asked what I did all day.  I explained, and they said that ‘oh, so you basically do what everybody else fits in on the weekends and after work.’  I felt ashamed then.  I felt worthless.  Is my life just made up of hobbies, then?  Am I so slow that it takes me all day to do what others do a in a few hours?

I tell other people constantly that there is nothing wrong with being disabled, that self-worth should not be tied to your ability to produce.  That the American ‘dream’ has been directly damaging to disabled people by making us equate our self-worth with how much money we earn.  That disability and autism are not a tragedy.  I tell the parents of autistic kids to not despair, that their kids will be fine.  I tell and I tell and I tell, and sometimes, some days, some days like today, it feels as if I am telling a lie.

Because the truth is, that I don’t know if I will be fine or not.  I don’t know if the world will end tomorrow in the haze of an atomic bomb, but I am increasingly worried, increasingly certain, that it will.  Which begs the question, then, what is the point of doing anything?  Why should I try anything if we are all going to die tomorrow? How do I stand with my principles while at the same time making connections that I need with people who go against those principles?  How do I even attempt to look for paid opportunities when all my non-paid work fills up my days and nights?  How do I improve my physical health when staying on top of my mental health? 

I have too many questions and not enough answers.  I spend too much time reading and not enough time doing.  When people criticize me, I am quick to agree, but when people praise me I think that they’re being ridiculous because if they knew the real me, they would hate me, too.

A child was dedicated at my church recently.  The parents were asked for their hopes and dreams for their child.  Among other things (including that he would acknowledge his own place of privilege, which was cool) they wanted the baby to grow up to have satisfying work and good mental and physical health.  Their dreams, the dreams of any parent, didn’t include a disabled child.  Nobody grows up to think, oh, I want to be disabled.

“Just because you don’t get paid for it,” a friend reminds me, “doesn’t meant that you don’t work.”

This is true.  I do work.  I write, I volunteer, I research.  I’m trying right now to establish the history of slavery within my church and finding that it’s a much bigger project than I thought it was.  (I knew there were enslaved people buried in our graveyard, I didn’t know who they were.  It turns out that various historical societies have very different views on who they are and all are certain they are right.)

I bake, I read, I show up, I sing.  I take comfort in music and musicals, rituals and rain. 

I remind myself that I may be grown, but I will never stop growing, and I will never stop fighting, either.

 

When I grow up

I will be brave enough to fight the creatures

that you have to fight beneath the bed

each night to be a grownup
Just because you find that life’s not fair, it
doesn’t mean that you just have to grin and bear it.
If you always take it on the chin and wear it
nothing will change!
Just because I find myself in this story,
It doesn’t mean that everything is written for me.
If I think the ending is fixed already,
I might as well be saying
I think that it’s OK!
And that’s not right!
And if its not right!
I’ve got to put it right!

 

(lyrics by Tim Minchin from Matilda the Musical, song: When I Grow Up)

Congratulations! A Letter to Parents of Newly-Diagnosed Autistic Children

Someone who used to go to church with me recently contacted me because her son has been diagnosed as being autistic.  She asked what she should do.  Don’t do ABA! I said, and, I’ll get back to you later with more.  Well, it’s later, and, as it turns out, I have quite a bit more to say…….

Dear Lucy,

Congratulations!

You have a beautiful, bright child with unlimited potential.  And despite what doctors may or may not have told you when they told you his recent diagnosis, this fact will remain the same until Peter turns 18, at which point he will be a bright, beautiful adult with unlimited potential.

Also: welcome!

Welcome to the autism club.  It’s not a club that any neuro-typical parents ever want to be in, and many will denigrate.  They will say that you don’t want autism in your life, that it’s a burden, it’s too hard, they are tired of fighting, they are tired of their child’s behaviors.

So I’m asking you, firstly, to stop listening to parents.  With few exceptions (squidalicious, diaryofamom) they will not paint a very positive view and they will undoubtedly exhaust and overwhelm you.

Seriously.  At this point in your life, other parents of autistic kids have nothing to offer you.  They don’t know Peter, they only know their own child.   

Listen instead to autistic adults. We are the ones who have been there.  We are the ones who have years of experience in every kind of therapy imaginable and who can tell you, long-term, what worked and what didn’t.

Oh, and you’ve probably noticed this by now, but Peter doesn’t have autism.  He’s autistic.  The same way that you don’t have whiteness, you’re white.  It’s called identity-first language and is preferred by the vast majority of autistic adults. Google it to find out more.  (In future in this letter this will be abbreviated to GITFOM.)

Secondly, start listening, and learning, from Peter.  He may not communicate in a typical way, but he will still manage to tell you what is really important.

Be prepared that your life will be lived at a slightly different pace than before.  It will be slower, more meandering.  It will take you longer to get places and longer to leave.  It will also be a deeper, richer journey, and you will start noticing wonderful things about the world that you never knew before.  Peter’s interests will lead you to sections of the library and internet and quite possibly the planet that you had no idea existed. 

What are his interests, by the way? I’d really like to know, because his joy in his interests will be like an exploding star, so wondrous, so bright that it overwhelms you, and it overwhelms him, too.  He may start to flap or run around in circles.  That is called stimming, or self-stimulatory behavior.  The doctors may tell you that that’s not good, that you should discourage it.  That’s utter and total nonsense.  Stimming is a physical manifestation of emotions which are too big for the body to contain.  It can indicate sadness just as much as happiness. 

Let Peter delve into his interests. Do not limit him in how much time he spends on them.  Relate other areas of your life to them.  Let him decorate his room and parts of your house with relevant materials.  Buy him gifts related to his interests.  Treat them as seriously as you’d treat the thesis subject of a doctoral student, because to him, they are.  

His interests may change over the years.  Some may fade out and disappear, some may fade and remain as hobbies or things that make him just plain happy, not joyous.  Expose him to as many things as you can, as many experiences as he can handle.  Let him know that the world exists for him to explore, and share his joy in acquiring new knowledge and in sharing it.

Thirdly, spend as much time outdoors as humanly possible.  The outdoors is the natural environment for autistic people.  We thrive in woods, seashores, meadows, deserts, and mountains.  The loud electricity that surrounds us in the city, the busyness, the constant hurrying, does not suit our pace.  We take deliberate steps and look before we place each foot.  Nature is its own reward.  Spending time in nature will calm him down and tire him out.  Simple exploration of wooded areas, with no toys or props other than what you find, should be done for at least a few hours a week.  If possible, put up a tent or fort in your yard, let it grow a bit wild with the trees, and let him be free.  In touching sand, mud, rocks, and gravel, in building with sticks and string, in drawing patterns in the sand, in picking flowers and leaves, he will get occupational therapy.  In stomping through different textures of ground, in splashing in puddles, swimming in oceans and ponds, climbing and swinging from trees and jumping from one spot to the next he will get occupational therapy.  Walk on the earth, not on pavement. Go barefoot if it’s safe. When you feel he can be trusted with one, give him a sturdy kid camera if he wants it and encourage him to photograph whatever catches his eye.  It will be another window into his world for you.

Teach him to swim, if he can’t swim already.  Autistic people are drawn to water in general and you live near a river.  He must learn to swim, and swim well, as soon as possible for his own safety.  Teach him water safety, that the river is dirty and polluted (because it is, let’s be real here) and to stay away from it.  But give him opportunities to immerse himself in baths and pools and safe water sources as much as possible.  Push to get swimming added to his IEP as a physical therapy goal.  It is a very frightening fact that autistic children are more likely to drown than neurotypical children, GITFOM.

Teach him that he is different, (although there is no doubt that he already knows) and his difference is called autism in the same way that your difference is called blindness.  Expose him to autistic adults and autistic culture.  Treat accommodations as a matter of basic human decency.  Learn about disability culture and history, and add it as just another kind of justice, like justice for LGBT people or African-Americans or undocumented immigrants. Teach him that his difference may make some things harder, but it will make other things easier, and that together, you will always be able to find a way.

Let Peter excel.  Autistic people have common strengths, like our memories, our ability to express ourselves unconventionally, the way we can hear things others can’t, feel things others can’t.  Figure out how he learns best, visually or verbally.  Learn that he may not express emotions the way that you expect him to, but that doesn’t mean that the emotions are not there.  He simply shows his empathy in different ways.  Don’t ever, ever let anyone tell you that autistic people do not feel like neuro-typical people do, or that Peter *must* be forced to do this or he will never do it on his own.  That is pure nonsense.  Peter will do what Peter will do when Peter is ready to do it.

Unless a legitimate medical doctor truly thinks there is a reason for it, don’t bother with quack cures or cutting out gluten or dairy or any of the other ridiculous, expensive cures that charlatans will try to sell you.  Peter is already perfect.  He doesn’t need to be cured, he just needs, like every other child, to be loved.

However, be aware that autism does affect the entire body.  Peter may be under or over responsive to sensory stimuli.  He may not feel hot, cold, or pain, or over-feel them, or not respond to them.  His diet may be limited due to sensory processing disorder and his gut may be messed up.  Do get as much fiber and nutrients as possible into him, and if you think he’s backed up, miralax has the world miracle in it for a reason.  GITFOM, or ask your doctor. 

I’ve yet to meet an autistic person who is not an artist in some way, be it in writing, painting, minecraft building, legos, or clay.  Expose him to every type of art there is and then some.  Make every kind of playdough you find on the internet until you find your favorite (except the marshmallow one, that one is a total disaster.)  Incorporate different textures, sounds, and scents into art as well as visuals.  Make music every day.  Sing.  Singing is a great, great way to teach autistic kids prosody and get them to have more fluent speech.

Peter will probably be clumsier than other kids.  The physical act of writing will take him longer to learn.  Do teach him, but also give him access to a keyboard so he can express himself in words without having to expend the enormous effort that physical writing takes.  Be aware that autistic people have a remarkable capacity for unintentional self-injury in ridiculous ways, but also, if you see any bruises that you can’t explain, find out where they came from.  Children with disabilities are more likely to be abused than their nondisabled counterparts.  Make it clear to his teachers and caregivers that you expect an explanation for every single mark that you see on him.

Teach him about his body.  Teach him to trust it.  That evolution made him who he is and that’s a wonderful thing.  Talk to a preschool OWL (Our Whole Lives, GITFOM) teacher for resources. Get him to know his body and that it is HIS, his alone.  Teach him to say no, early and often.  Respect his no.  Tell his teachers to respect his no.  This is a crucial, crucial lesson in preventing sexual abuse, which is all too common for people with developmental disabilities.  I didn’t know that I could say no as a kid, and ABA programs teach compliance, not bodily autonomy.  If he wants hand-over-hand help, that’s fine.  But if he wants to struggle for months to tie his shoes, let him – or buy him Velcro ones. 

Unless it is a matter of physical health or safety of him or another person, for example, vaccinations at a doctor’s office or preventing him from running into the river, nobody should be touching him without his consent.  This includes relatives who want a hug or a kiss.  Peter doesn’t owe them anything.  When you let him choose who to interact with, you are telling him that he is a person worthy of respect, and that you will listen and respect him.  On the other hand, if he gets violent towards you or is playing too rough with anyone, do not hesitate to remove yourself from the situation and explain why.

Your doctor may have said that Peter isn’t hitting certain milestones.  This is probably true, but it’s also true that he will almost certainly hit them years later.  Many neuro-typical kids go through a ‘why’ phase at three or four.  Many autistic kids do it as tweens or teenagers.  It isn’t a matter of going through the alphabet in the wrong order, though – it’s a matter of it being a different alphabet altogether.

The only absolutely necessary therapies are 1, whatever teaches him to swim and 2, communication/speech therapy.  Get him an evaluation for an alternative communication device if he seems to be frustrated with his communication skills – see www.niederfamily.blogspot.com for more, best site ever on the importance of alternative/augmentative communication, or AAC.  When he communicates more, he will be able to tell you what he needs, what he likes and doesn’t like.  Autistic people do *not* learn things if we are miserable but we *do* love to learn.  Your goal in all therapy should be making sure that Peter is happy and learning.  It doesn’t necessarily matter what he is learning. 

Push self-help skills.  Don’t do everything for him, or he will go through life like an entitled prince.  Show him how everyone in the family works at whatever they do, and he has to work to take care of himself like everyone else does.  It is much, much easier and faster if you just bathe him and dress him every day, but if you do that you’ll wake up to a teenager who still needs your help in the bath.  Charts are very helpful here.  Put your chores alongside his.  If he shows interest in earning things, you can offer incentives like, a new matchbox car if he brushes his teeth by himself for a week.  (He will need reminders, of course, until he leaves home, but this applies to every child.) 

I’m not going to lie.  Autism sucks sometimes.  It is hard sometimes.  But I won’t warn you about all that stuff because, quite frankly, you’re probably dealing with enough right now. Join the FB group ‘parenting autistic children with love and acceptance’ and if you can’t figure out how to help him through the hard times, ask autistic adults.  We almost always have answers that you haven’t thought of.  For example, many autistics get upset or anxious right before a big storm.  This is because we can feel the dropping and rising of the air pressure and it is really painful.

Be aware that Peter will have some disadvantages due to his autism, but he’s also a white male in American society so he’s already got a huge leg up on the majority of the world.  Do emphasize, early, the importance of looking neat, because, awful as it is, oftentimes people will overlook or excuse the odd behavior of people if they are dressed and groomed nicely.  Of course, don’t torture him with haircuts, let him wear whatever (clean, fitting) clothes he wants, and get all unscented soaps, lotions, etc. 

Don’t push Peter to be like his NT peers, because he won’t be.  He will only ever be like himself.  The chances are high, however, that as he grows older his best friends will be other ‘quirky’ kids, which is why it is important that he knows of his autistic identity early on.  The problem with schools is that they put all the kids together and expect them to naturally form friendships.  That will probably not happen with Peter.  You will need to seek out the parents of other oddballs and arrange playdates.  If there’s another kid who shares his common interests, great.  Don’t just limit him to school friends, though.  Autistic people are really great at intergenerational relationships.  Bring him along to many different intergenerational events and you’ll likely find he connects best with those much older or much younger than him.  That’s fine.  I have friends who are teenagers and friends in their seventies.  It doesn’t matter how old or young a person’s body is as long as their soul is warm and welcoming, and autistic people have a remarkable ability to find fellow members of our tribe.  Remember that a playdate consisting of two kids each on a separate ipad is still a great playdate. 

You are undoubtedly overwhelmed and anxious now.  Somebody has probably said to put Peter in 40-plus hours of ABA (DON’T DO THAT!), or on a special diet, and somebody has probably sent you a stupid poem about Holland which is ridiculous because people are people, not countries.  But you’ve raised Peter for – I actually have no idea how old he is, four or five? – years already and he’s fine.  He will continue to be fine, and so will you.  Just remember:

  1. Listen to him.
  2. Listen to autistic adults.
  3. Don’t abuse him. (see #2.)

 

You’ve got this. 

All the best,

 

Ekie

Dark Humor, Disability, and Community Coping

Why, hello, old blog.  Haven’t seen you in a long time……….

Let’s start with a story, shall we? I like stories.

I’m at the doctor, walk-in urgent care, with my friend Jayne.  We think she has pneumonia, or damp lung, or something else that is resulting in her feeling like utter crap.  So I drove and accompanied her into the exam room because they often leave you there for long periods of utter boredom and we are both bored already but have a unique relationship where we never, ever run out of things to talk about.  The doctor comes in.  He gets Jayne’s pronouns wrong, I don’t say anything.  He asks her to look at a chart and check her medication list.

                “I can’t,” says Jayne calmly.  “I’m blind.”

                I swallow a snort because I’m pretty sure that in that chart it says that Jayne is blind, but then the doctor starts his examination.  The first thing he whips out is…….an otoscope.  No, that’s wrong, but I can’t find the word. You know what I mean, those tiny little light things for peering in eyes?  And he starts to peer into Jayne’s eyes and I……….I crack up.  Completely, totally lose it.  I’m laughing my head off because I know that the eye he is so carefully examining is glass, and within seconds, Doctor gets a very weird look on his face.  Jayne is more patient than I am.  She informs him of her glass eye (which he would know if he bothered to, I don’t know, look at her chart) and he responds by calling in a medical student not to learn about pneumonia, but about – you guessed it – glass eyes.

                It’s months later and that story still makes me laugh.  A doctor! Examining! A glass eye!

                Disabled people almost always think that this story is hilarious.  (Because it is.)  Non-disabled people, and those who don’t spend time in the disability community, generally get confused about it.  They get a weird look on their face because, well, what could be funny about glass eyes?

                I’ll give you another example.  Years ago I was doing personal care for my favorite kid and she goes into a grand-mal seizure.  I call her mom over and we get out the suction and the diastat and the oxygen and in the middle of this the kid projectile vomits.  I dodge out of the way, but her mom gets hit head-on.  Ten minutes later, when the seizure has stopped and everything is calm again, her mom goes to change her clothes and we sit by the kid and we laugh and laugh and laugh, because it was so damn convenient that the vomit hit her, and not me, (I don’t have a change of clothes) and the distance the vomit travelled and the perfect aim of it –

                The person I’m telling the story to goggles a bit.  “But what’s so funny about a seizure?” they ask.

                I try to explain, and fail.  It’s not that the seizure itself is funny, it’s the timing and the vomit and the fact that in the end, everything was okay, or as okay as it ever was.  It’s the basic fact that sometimes, if you don’t want to cry, you just have to laugh, and I think that this fact is at the basis of most disability humor, and is the reason that most disability humor tends to be, well, rather dark.

                As am I; as are we.  Dark as our souls, dark as the blood that pours from our bodies, dark as the nights which are so long, cold and bitter as the winter’s wind.  If we don’t laugh, we’ll cry, so why not laugh?  It may not be funny now, but it will be one day.  I think.  I hope, because sometimes, hope is all we have.  Hope and laughter, and the hope that the laughter will come again.

                2017 was a hard, hard year for me.  It was a hard, hard year for many in the world.  It was the year when I became not a person with a disability, but a card-carrying Disabled Person.  After many years of fruitless job interviews, I applied for and was granted social security disability.  Seeing the reports that the doctors wrote on me was one of the most depressing things I’ve ever experienced.  You think that you’re a competent, capable person, and then you find out that your doctor thinks you’ll probably end your days in a psych ward, or worse.

                I lost friends this year, dear friends who I thought were family, not through death, but through cruel indifference and cutting words.  I had so many good times with them, so many good intentions, but I realized that those don’t mean anything.  My dealings with people will always be just one step away from disaster, destruction, despair.  I mourn these people deeply.  I miss them, but I know that they don’t miss me.  My fingers itch to text: ‘what’s up?’ but I know they won’t reply because they stopped replying a long time ago.  Their ghosts will haunt me for decades.  I can’t hug a miasma but I feel their skin against mine just the same.   

                I had my back surgery, and left my part-time caregiving job because my body just couldn’t do it  anymore. I am now am trying – and failing – to fill up my days in some other way.  I volunteer, I go to meetups, I swim, I walk, I bake, but somehow I still have hours and hours in which I need to get stuff done and yet I haven’t.  I haven’t organized my papers or my filing cabinet since August.  I haven’t filled out the application for affordable housing.  I haven’t really left the house since Christmas unless necessary, because the windchill is in the negative double digits and my entire body says to go back to sleep.

                My entire body is one mass of rock-hard pain from shoveling snow, trying to get my car out.  I sit down and write a list of my blessings: Medication to make me feel better.  Hot pack to put on my back.  Food, including chocolate.  Heat.  Windows that close, blankets that are warm.  Power, and the internet where I spend so many hours.  Small relatives to hold and give back when they cry.  I’ve read that doing this, that counting your blessings, improves your mood.  It doesn’t, not really, but then again, I’m on so many medications right now that I am unable to feel anything at all, not excitement, not anger, just a constant anxiety – nuclear war, losing my healthcare – and a feeling of relief when it’s time to turn out the light.

                Centuries of oppression led disabled people to develop our own culture, part of which is our own jokes and humor.  As people were crowded into institutions, cut off from their biological ties, they created new ones with their fellow disabled people.  When they closed the residential institutions, culture took root in the community, in organizations, in newsletters, in schools.  Most recently disability culture has been flourishing on the internet, enabling people from all over the world to connect with each other and to be the ones laughing at others instead of being laughed at.  Our precious in-jokes, our sarcasm, our biting wit, was born out of necessity.  It was born because sometimes you can refuse to give in to oppression.  You can refuse to give the people in power what they want.  They may control your body but you control your mind.  And so when you won’t give the world the satisfaction of seeing you cry, of seeing you bent and broken, you laugh, because it’s the only thing you can do at all.

            Dark humor also makes an in-group of an out-group.  Our own private jokes and things that we alone find funny are armor against an often-hostile world.  We use it like blankets, huddling around the flame of what only we find funny, keeping each other warm.  We who so often are the butt of jokes can find great pleasure in making jokes that only we understand.  We who are so often excluded from society at large use humor and sarcasm to pretend that we were not hurt by this exclusion, that we would rather be around other disabled people, anyway.  

             Sometimes, non-disabled people simply do not get this.  They don’t understand what is so funny or why we are laughing at what they see as a tragedy.  We see a leg-bag run over by a wheelchair, urine splattered on the floor, and it’s comedy; they see bodily fluids and are disgusted.  But what’s so disgusting?  Disability is natural.  Bodily fluids are natural.  American society at this place and time have determined that disability is a thing to be ashamed of, that our bodies and brains which are so different are wrong, bad, disgusting.  We rise up in the face of this oppression and use our humor and our culture to say, we are here, we are proud, we are not ashamed.  It’s you who doesn’t get it.  It’s you who we make fun of, because that feeling of being in the in group makes us feel powerful in a world where we so often are powerless.

            Sometimes we will take the time to educate non-disabled people, but sometimes, we just don’t have the time or the energy or the inclination to do so.  Explaining something to a stranger will most likely take a fair bit of time as well as have a net negative outcome.  Sharing a secret joke will take two seconds and make us feel good.  So who can blame us if we huddle around our own fire?  You have been excluding us from your campsite for years.  When a non-disabled person assumes that they will automatically gain entry into disabled space, they will often be met with rebuffs not because their own intentions aren’t good, but because disabled people have faced lifetimes of being excluded and harmed by non-disabled people, and so it is not a natural thing to assume the good intentions of others, not when we have been hurt so much.  It’s nothing against the non-disabled person, it is a safety mechanism which we have to put in place lest we be hurt.

          Because we are hurt.  Because we continue to be hurt.  The world is hurting, we are hurting, you are hurting, I am hurting.  I try to remember that the winter is long, but the sunset comes just a tiny bit later each day.

                So what happens now? What can anyone do, in this world so full of people who don’t understand and don’t want to understand?  I drink a lot of coffee and bake a lot of cookies.  The weather warms; I wade through puddles of slush to pick up three dozen balloons for a church event.  They are colorful, bright, bobbing happily in the wind and rain – I know that the world is running out of helium and it’s a precious resource that we shouldn’t waste on a party but I love balloons just the same.  Some part of my heart still finds joy in these tiny things.  Some part of my heart has yet to die off.

                He was examining.  A glass eye.

                We crack up, again and again.

                 

 

 

nb: ‘Jayne’ is a pseudonym and the story is shared with their explicit permission.  Huge bonus points if anyone can find the two references to one of my favorite fandoms.